A year after diagnosis......

Saltdog Member Posts: 30
edited 27. Jul 2016, 05:03 in Living with Arthritis archive
It was about this time last year that I first contributed to these boards. I'm afraid my stay last year was brief and I lost touch with this forum and many other things in my life. I was diagnosed with psoriatic arthritis and it's most definitely changed my life!

I started on Sulfasalazine shortly after posting here for the first time and have since progressed to taking 6 a day. They never worked for me. I never had any side effects but neither did they dull the pain and help in any way that I noticed.

After getting to 6 tablets with no improvement, my rheumy put me on an increasing dose of methotrexate in addition to the Sulph. Funnily enough, these increased up to the magic number of 6 per week eventually! Again, not much help until I actually got to 6. Up until then I was on a daily cocktail of Naproxin, Paracetamol and Codeine Phosphate to cope with the pain. I'm glad to say that now (fingers crossed) I'm pain-killer free!! However, I'm not pain free. A definite step in the right direction though.

My moods have been erratic through the whole process. I've kept working offshore luckily but sometimes getting in to those awful flight suits has been a struggle. I'm lucky that I'm mainly control room based when I actually get to work. This has meant that the money is still coming in. I imagine if I'd had a more physically demanding job, I wouldn't be doing it any more! I've gone through many low points over the last year and it has definitely put a strain on my relationship. My wife is an angel though and has been as understanding as anyone possible could be in this situation. My baby daughter who had just appeared before I was posting last year is now 18 months old and quite the handful!! One of my many regrets during this is that I'm unable to get down to her level and play on the floor.

My main issues are with my right foot, right knee, both elbows and shoulders. I've been trying to stay as active as I can with gentle walking and cycling. I want to get running and mountain biking but my joints aren't quite there yet.

I wanted to come here today and give an update as many of you were so helpful last time I was here. I'm sorry I've not been around but work and a crazy 18 month old whirlwind seem to take up all my time.

Life is ok at the moment and I'm taking each day as it comes. One thing I have noticed is that my mood seems to affect my pain levels. When I'm happy I definitely feel less pain. That's where I'm trying to stay. I'm not sure if I'll ever be pain free - maybe someone on here can tell me just how effective these drugs can actually be? I've not seen my rheumy this year as I live in a rural community and he only visits once in a while. I've been regularly visiting my GP for help though. My wife and I are keen to have another baby so I need to see the rheumy for some advice soon. I know we shouldn't conceive while I'm on methotrexate so I want to know what my options are. I don't relish the idea of spending a long time in pain but if that's what it takes, it'll be worth it in the end.

Anyhoo, this post seems to have waffled quite a bit as I'm actually at work on night shift and my concentration is split between this and work. Hope I've not bored anyone.


  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    It's good to hear from you again Saltdog, and that progress has been made. Picking up on your point about pain and the drugs, it's worth remembering that the drugs are to manage the disease effectively, and that presence or absence of pain isn't necessarily a measure of how well they're doing that sadly. As you have noted your mood has an effect on pain levels which is why distraction can be a good way of managing pain.
    Being unable to get down to your daughter's level is frustrating but she will be rapidly growing to meet you and able to sit at table or on a settee to engage in activities with you. From her point of view, especially in these early years, this is how daddy is. Any frustration on her part will be the normal toddler not being understood/getting her own way, rather than to do with your condition. Children can be very accepting and also caring and thoughtful about difficulties their parents may be experiencing.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, thank you for the update. Pain is part-and-parcel of our conditions and it's the hardest part to accept and adapt. I'm now in my twentieth year of PsA and, like you, find the meds useless at reducing pain levels but I know they are controlling disease activity: that is the important thing.

    Any aspect of life is easier when we are feeling happier within ourselves, I think that one of the secrets of pain self-management is not to focus on it, to NOT give it the attention it's demanding. When I began humira eight years ago (in addition to injected meth and sulph) my consultant promised me that I would be able to stop my pain relief and ditch the sticks - as if. I regard my cocodamols as a necessary daily medication because they do what the other three don't (well, not for me) in making life tolerable which is as good as it gets. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,309
    edited 30. Nov -1, 00:00
    Not at all bored, saltdog. It's lovely to hear from you and that things (even if not ALL things) are somewhat better on the sulf / meth combo. Six is by no means the maximum dose of meth. I was on nine at one point so you have room for expansion though I hope it won't be needed. As for how effective the drugs can be – they can be extremely effective but their effectiveness can depend on many imponderables such as how quickly we get on the right one for us, how aggressive our disease in the first place, how much our lifestyle helps or hinders.

    You're quite right that mood plays a big part in how we feel and how we perceive pain. That's a bit of a tough one since pain also influences mood but, if we know the score, we can try to tip the balance in our favour. I'm sure your daughter will help to do that. As for not being able to get down on the floor with her – I remember, with my sons, that, I could slide from an armchair to the floor and, when I wanted to get back up, if I removed the chair cushion to make it lower, I could raise myself backwards onto the chair then gradually insert the cushion underneath me so that I was high enough to stand. My physio for the day :lol: I do think though that adults want this more than kids. My grandsons have always known I couldn't get to the floor with them so have always brought their toys to me on the sofa or table. I think such things make them more thoughtful people.

    Arthritis does, without doubt, put a strain on a marriage. Both parties suffer from it but in different ways. We have to learn to support the one who is supporting us. It can be tricky. I felt, in my younger days, that arthritis will find every potential crack in a marriage and attempt to force it wide open. I think we have to, together, acknowledge the cracks and deal with them rather than rushing round with polyfilla :wink:

    Running and mountain biking sound quite high impact to me. If they are a dream then hang on to them but, for me, the key has always been to be prepared to let things go, however treasured, but to ensure that they are replaced asap by something new and intriguing. Playing the piano gave way to a course in composition. Walking gave way to Riding for the Disabled. There are tons of new experiences out there.

    Pain-free has never been an aim of mine. I don't see it as realistic and have seen several people get into difficulties by pursuing that path. They end up on more and more narcotics yet, apparently, more and more pain. Maybe it's the 'happiness' thing you wrote of. Maybe the pursuit of 'pain-free' just makes people unhappy because it makes them concentrate on pain (I will be happy when the pain goes and not before) whereas accepting pain as part of life and aiming to enjoy life anyway reduces the power of the pain.

    You're right about not going for another baby while on meth. I think the whole area is less well-researched for men than for women but, from what I've read on here, the answer seems – for women – to be either sulf or steroids or both. Your rheumatologist will advise, I'm sure. Good luck!